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Upcoming Events
SADS International Conference -CME Program Oct 1st -Atlanta, GA
50% off registration now through September 1st!
Buono Vino Wine Tasting in Memory of Stephanie Mejias -June 23, 2011 -Union, NJ
Climb to Conquer SADS -July, 7-10 -Washington State
Charity Hockey Game in Memory of Jonathon Cowley -July 16 -Richmond, VA
Climb to Conquer SADS Celebration Party -July 17, 2-11 -Spokane, WA
"Where's Bob?" -Cubs vs. Astros -July 22-Chicago, IL
Brittany's Trees Neighborhood Block Party -July 23 -Carol Stream, IL
Ohio SADS-Parent Conference -Columbus, OH -July 28
Tolosky Saratoga Springs Pre-Heartoberfest Race Event -August 14-Saratoga Springs, NY
SADS Benefit Concert at the Bluebird Cafe -August 18 -Nashville, TN
SADS Safe Schools Month -September
"Where's Bob?" in NYC -Cubs vs. Mets -September 11-New York, New York
6th Annual Christie's Heartoberfest Sep. 17 - Ballston Lake, NY
14th Annual Layton Oktoberfest -Colorado Springs, CO -Sep. 17
"Tri" for Abbey Triathlon in memory of Abbey Wambach -Sep. 24 -Rockville, SC
For information about any of these events, or for assistance planning your own special event, contact Laura or call 800-786-7723. |
17th Annual No Ball At All
Contact Laura or call 800-786-7723 to get involved! |
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Greetings!
Welcome to our first issue of the SADS bi-monthly medical professional e-newsletter. Please read, send us comments or critiques and forward to all your colleagues. We want to make this e.newsletter exactly what you want and need it to be!
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Ask the Experts: Coming Soon!
 The "Ask the Experts" section of our Medical Education e-newsletter will feature an article discussing hot topics that are relevant to our medical community. If you have interesting or controversial topics you would like to propose for discussion, please email them to Christine at Christine@sads.org. Topics/questions submitted will be discussed with SADS Scientific Advisors and comments and consensus will be published in subsequent e-newlsetters. We welcome any ideas for this interactive article. |
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Heart Rhythm Society /PACES Pre-conference
The SADS Foundation was in San Francisco May 2-7, 2011 for the 32nd Annual Heart Rhythm Society Scientific Sessions. The meetings began with the SADS co-sponsored Pediatric and Congenital Electrophysiology Society (PACES) pre-conference meeting. SADS distributed materials to physicians and other health care providers and attended lectures by expert speakers and panelists. Cardiac channelopathies and sudden cardiac death were among the topics discussed and speakers included several members of SADS Scientific Advisory Board.
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New Guidelines for Genetic Testing for Heritable Arrhythmias Presented at HRS
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Dr. Silvia Priori
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During the Annual Scientific Sessions, an expert panel of physicians and researchers, co-chaired by Michael Ackerman MD, Ph.D and Silvia Priori MD, Ph.D, presented a paper on consensus guidelines for genetic testing of SADS conditions. Genetic testing has come a long way since the first cardiomyopathy and channelopathy genes were discovered in the 1990s and the future is looking quite bright. These guidelines are the beginning of a long-term look at genetic testing recommendations and best practices. The guidelines contain detailed recommendations for six channelopathies, five cardiomyopathies, out-of-hospital cardiac arrest survivors, and post-mortem testing in sudden death cases.
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Dr. Mike Ackerman
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The utility of genetic testing is different for each condition, which is why these guidelines are specifically important to physicians who work with several of the conditions. Other elements of the guidelines include the need for proper evaluation of genetic tests via counseling by either the physician or a genetic counselor and the need for a more thorough investigation into sudden death in young people. As medical advances continue to be made, these guidelines will be increasingly important and thus will continue to be re-evaluated by the panel. This paper will be published later this summer.
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SADS Foundation Annual Young Investigator in Cardiac Channelopathies Awards
 | | Dr. Charles Berul presenting the award. |
The award in the basic science category went to Ahmad Amin of The Academic Medical Center of Amsterdam for his paper titled "Functional Variants in the 3' Untranslated Regions of the KCNQ1-Encoded Kv7.1 Potassium Channel Strongly Modify Disease Severity in Patients with Type 1 Long QT Syndrome".
The award for translational/clinical science category went to Peter Aziz of The Children's Hospital of Philadelphia for his paper titled "Genotype and Mutation Site Specific QT Adaptation during Exercise, Recovery and Postural Changes in Children with LQTS".
Congratulations to both winners for their outstanding efforts in cardiac channelopathy research.
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EP Lab Inducibility a Poor Predictor in Brugada Syndrome
Based on a cohort of 308 patients with Brugada Syndrome in the Italian registry, data suggests that VT/VF inducibility by programmed electrical stimulation (PES) does not adequately predict sudden death and cannot be used as a means to risk-stratify patients when making decisions about treatment with an implantable cardioverter-defibrillator (ICD).
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Dr. Carlos Napolitano
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The data was presented at the Annual Scientific Sessions by Dr. Carlos Napolitano, who indicated that during their research, other markers, including some that are measured non-invasively, demonstrated significant predictive capabilities. The study confirmed the prognostic value of spontaneous type-1 Electrocardiogram as well as a history of syncope and for the first time validated QRS fragmentation and ventricular refractory period <200 ms as independent risk factors. If the latter two criteria are confirmed through additional research and linked to other predictors that are already known, physicians could potentially stratify risk effectively enough to determine whether or not a patient requires an ICD.
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SADS Medical Education Program Expands
 The SADS Foundation provides cutting edge information and education to healthcare professionals nationwide in order to facilitate early recognition and accurate diagnosis and treatment of heart rhythm abnormalities. In 2011, we will increase our existing physician education program by working closely with our network of researchers and experts to provide seminars, CME programs, Webinars, and other educational opportunities. We will also expand our physician referral network and the Medical Examiner outreach program. Our ultimate objectives are (1) to create a comprehensive network of pediatric and adult specialists across the country who can diagnose and treat SADS conditions according to best practices, (2) to create awareness of SADS conditions in primary care physicians (emergency room, pediatricians, family physician, etc.), (3) conduct targeted medical seminars to provide education to medical cardiac specialists. Visit our website or contact Christine@sads.org to find out what you can do to help us educate physicians in your community about SADS conditions. |
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SADS Scientific Advisors in the News
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Dr. Sami Viskin
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Dr. Sami Viskin
Dr. Sami Viskin of Tel Aviv University's Sackler Faculty of Medicine has recently published research in the Journal of the American College of Cardiology regarding screening for Long QT Syndrome in athletes especially. Dr. Viskin developed a special test called the "Viskin Test" to better recognize patients with a higher risk of sudden cardiac arrest.
The "Viskin Test" is based on the researcher's discovery that slight abnormalities between normal and at-risk patients could suddenly be made more visible using a simple bedside test that requires a subject to suddenly stand up. When standing, at-risk patients will experience a measurable difference in a portion of their heart rate called the QT interval. The difference can be detected by an electrocardiogram (ECG).
For more information, please visit our website.
Dr. Dan Roden
How can genetic testing help physicians decide which medical therapy might be most appropriate for each patient? This program explores the use of genetic testing in diagnosing and treating Long QT Syndrome and other heritable channelopathies.
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Dr. Dan Roden
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This program features Dr. Dan Roden, Professor of Medicine and Pharmacology and Assistant Vice-chancellor for Personalized Medicine at Vanderbilt University School of Medicine, and SADS Scientific Advisor. Dr. Roden explains that the concept of personalized medicine goes beyond genetics; it is also about meeting a patient's goals and individual needs.
Visit our website to listen to this program or download the podcast.
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What Can the SADS Foundation Do For Your Patients/Families?
The SADS Foundation can help support your channelopathy patients by providing:
- A hotline for questions
- SADS Pedigree Project to help identify family members needing screening
- Networking for family members
- Support for youth via the SADSConnect Program
- Information for newly diagnosed family members
- Care Plans, etc. for an affected child's school (SADS Safe Schools)
- Assistance with insurance issues such as appeals or denials
- Research projects, including labs interested in studying people with a negative genetic test-we just had a family with a negative LQTS test discover their CPVT gene in a research setting.
- Recommendations for other lifestyle issues such as: genetic testing, exercise, medications, AEDs for home use, ICDs
How you can support the SADS Foundation:
- Make a contribution to the SADS Foundation and receive our Quarterly Review of Literature
- Access www.StopSADS.org regularly for the latest on SADS conditions and research
- Display and distribute SADS Foundation materials in your offices, places of business, and community centers
- Refer your patients to the SADS Foundation for support and additional education.
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Science & Technology Updates
S-ICD: A Promising Alternative to ICDs
 A new device called the subcutaneous implantable cardioverter defibrillator (S-ICD) system has recently been studied by a group in the Netherlands. The multi-center Dutch study was presented at the Heart Rhythm Society's 32nd Annual Scientific Sessions. In the study, the S-ICD system was 100 percent effective in converting induced ventricular fibrillation (VF) through appropriate shock. The study findings show that the S-ICD system is comparable to the conventional ICD system and is a viable option for patients without pacing needs. The S-ICD system is minimally invasive compared the conventional system in that it does not require direct access to the heart. This leads to fewer complications for patients and can easily be explanted if needed. The S-ICD system has been accepted in Europe and is currently under review by the U.S. Food and Drug Administration for use in the United States. |
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Sincerely,
Alice, Laura, Christine, Anne, Adrienne, Sarah, Amy, & Kara
The SADS Foundation |
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